Coming off Olanzapine

Hi unbeknownst,

Well done on seeking support on here before making any spur of the moment decisions. I am always tempted to make sweeping changes in my life but this can prove disastrous.

My honest advice to you would be to stick to the advice of your Dr and remain on 5mg for now. I can't illicit if you have been diagnosed with Bipolar Affective Disorder but assuming you have, then a controlled maintenance dose will support you during your transition period into university. I believe you are fortunate because although you have some unwanted side-effects, they are not very severe so it looks like you tolerate this medication very well.

Bipolar and other mental health disorders can be stress related so when big changes occur in our lives such as changing jobs; moving house & going to university and so on can be stressful even if we don't realise it at the time. I think your Dr is being sensible because he is most likely trying to protect you from having an episode which will spoil your chances at university. When things settle down for you, you could always try to reduce your dosage to 2.5mg.

i wish you well now and for when you start your new course.

Regards,

Mervyn.

Thank you for your reply, Mervyn. It means a lot and I think you are right, my doctor just wants to ensure I am stable for my transition into uni life. I just got a bit worried after reading all the comments about the adverse effects of long-term use of olanzapine. Thanks again for your insight!

Hi Bruce,

I hope you can get on to something alternative and get off it.

Good luck!

Colin

 

Hi Bruce

if you do decide to come off it then do it really slowly over months so as not to induce a psychosis or you can end back on this stuff for ages.  Also listen to the advice of the psychiatrist who may say for most effectiveness you need to stay on for example six months before coming off.  This was the time frame a very experienced psychiatrist gave me in1992, that is to stay on for six months before coming off.  Take this into consideration when making a decision.  There is a lot of advice on this forum from me and others who have cut pills to reduce slowly but feel free to ask any questions you like about how to come off slowly.

cheers Marbel

Hi Again Bruce,

If you have only been on this stuff a month but are worried about psychosis returning if you get off then I would suggest talking to a psychiatrists also as well as a GP about changing it.

I started cutting down from 2.5mg about 6 months ago. i had been on 10mg for years and slowly got down to 2.5mg after about 9.5years.

Anyway, I have been off this stuff completely for nearly 2 weeks and so far so good. Takes alot of effort after so long. The point of this note though is to let you know that there are serious side effects with this drug. One being that it can change the rythym of your heart. It affects the electrical signal. If you talk to a psychiatrist he will comfirm this. It does something to the QT interval. I am 44 years old, no family history of heart probs on either side, living grandparents over 100. great aunts over 100 and aunts and uncles well into their 80s. I now have an arythymia and slow heartbeat. My resting heart rate can be as low as 36. This is called bradycardia. It can be attributed to being very fit. I am quite fit howvere I have developed a severe heart palpatation where my heart misses beats for a prolonged periods which causes me to almost pass out. I will admit that this only started a few days after coming off the drug comletely and I am not 100% sure whether it has something to do with that or not. A little research will tell you this drug does many things to your heart, bradycardia, sick sinus node syndrome etc. I'm not trying to freak you out merely point out if its only been 30 days then it should be very easy for you to change to something else...if you need to. The irony of all this now is that I cannot take olanzapine if I have a slow heartbeat, so if the psychosis returns...

With all that in mind I have made a complete lifestyle change in most areas, eating - exercise - sleep - friends - community involvement - support networks to help try and combat anything that does happen.

Its just abit of info and friendly advice and certainly not meant to instill fear. If you can change then I would and I would find out all the info about any suggested new drug first Bruce.

Regards,

Colin  

Many thanks for those thoughts and comments.

I can see that I am going to have to take any change really carefully.

But at the end of the day, I need to be off Olanzapine. My appointment with my GP is tomorrow, I'll report back what he says both about the side effects of Olanzapine and any alternative he suggests. My GP is Dr Tony Edwards, well known for his alternative medicine approach.

Once again, many thanks to you all.

If youve had too many antispychotics, I dont like your chances,  but if olanzapine is all youve been on,  maybe you have a chance to get off,  get off now while you still can,   and just remember insanity is all a form of illogic, so you got to wisen up or youll be on pills for the rest of your life...

This is exactly the type of "stigma" which is exacerbating the whole condition."you cant do it, youre not well, theres something wrong with you" this makes the sufferer worse,and adds to the whole mental pain thus the user increases the dose or is frightened to come off. Anybody can and should come off Psych medication. The new advanced researched Psychatrists are now saying THERE IS NO LINK BETWEEN MENTAL ILLNESS AND CHEMICAL IMBALANCE IN THE BRAIN, there is NO physical proof to support this old thereory, nor is it a brain defect nor is it genetic, read the statistcs go online, the new wave of informed Pshychatrists are now treating the cause which they believe is past trauma, environmental stigma and cultural exclusion which makes the sufferer worse, so docs medicate, to sedate the client INSTEAD OF HEALING THE CAUSE.H ave a look at GARY SIDLEYS pioneering work, and LAURA DELANO......true testement to PSYCH meds are dangerous and exacerbate the problem.

Thanks Ashley, I will have a look at this guys work. I think what we can glean from what magnus is saying and i believe to be 100% correct is that you "got to wisen up". As you have stated, its about past trauma and when you "wisen" up to that and remedy it things start to become clearer. Another good point he made was that insanity is all forms of illogic, so that could could apply to nearly every individual on earth. I believe "mental illness" is merely an experience that everybody goes through to varying degrees. Its nothing new and has been around since man first walked. It just happens to be a money making opportunity now.

Absoloutely Sack. Im doing lots of research. I will keep you all posted.

Hi Ashley, Replying to your post as you're the last one chronologically, but I'm in desperate need of urgent advice concerning a possible side-effect of olanzapine. I've been writing to the manufacturers and generally haunting olanzapine forums to the point of obsession these past few weeks. I suspect people who've been on this drug will know more about it than the so-called experts.

It's not for me, it's for a friend. No, really. (I'm a retired former nurse and now volunteer in a mental health centre/crisis line, so I know that's the only way some people feel they can approach the subject.)

Does anyone out there have experience of olanzapine causing anything like tendon disorders in the hands? I'm the sole carer for an 80-year-old friend suffering from vascular dementia. She was doing fine in a lovely retirement home till a year ago, when she suddenly flipped over into psychosis. This was the result of quite innocent events in the home bringing back memories of severe childhood sexual abuse. Won't go into details, but as a result of her subsequent attacks on staff and other residents she's now detained for life in a high-security psycho-geriatric unit, where they've got her on olanzapine 10mg, mirtazapine 30mg (both in the evening) and xanax 0.5mg twice daily.

Now, olanzapine is a walk in the park compared with the terrible extrapyramidal side-effects she got from risperidone and clozapine in their earlier attempts to knock her flat, but two months after starting olanzapine she developed an alarming condition in her left hand. It swelled up massively and the last three fingers bent into the palm. This all happened overnight (literally - I visit almost every day and watch her like a hawk). Three months down the line, she's had an X-ray, seen a rheumatologist and a neurologist and everyone just shrugs their shoulders - never seen anything like it, not interested. The swelling is now grotesque - hand swollen to more than twice normal size - it's completely impossible to unlock her fingers to cut her nails, which have now bitten so deeply into her palm they can never be cut, and she's developed a terrible infection which will probably become gangrenous, resulting in amputation.

And now the same thing is starting in her other hand. This definitely isn't behavioural. Sure, people with dementia tend to flex their limbs, which can then become spastic, but this isn't the problem. She tends to keep her arms tightly crossed over her chest, but she can extend them when she wants to. The hands are a different matter. She spends hours trying to unbend the fingers of the affected hand with her good (or less-affected) hand, and sometimes asks me to help.

I don't know why I think this, but I'm becoming increasingly convinced olanzapine is playing a part, especially as both hands are now involved. I know peripheral oedema (swelling) is a known side-effect, and am wondering whether these hand problems are due to swelling inside her hands, as well as out, resulting in pressure on the tendons. I've begged and pleaded with the home's doctor (not a psychiatrist or geriatrician, just a GP doing a bit of lucrative business on the side) to at least reduce the dose, to see whether this has an effect, but I'm getting nowhere.

Please, I'm desperate to save my friend's hands. Does anyone out there have any experience at all of stiffening or swelling of the extremities while taking olanzapine?

No need to tell me this is an off-label use for olanzapine (and all other anti-psychotics). I'm well aware of this, but this appallingly dangerous class of drugs is used for at least 50% of dementia sufferers all over the world.

Thats a bad case.   Olanzapine could do many things, to me personally it used to attack my back.

One thing I know for sure,  is the sideeffects are worse when you just get started, lots of people would agree with me, expert or non expert.

Its not fun to be on,   Whats she doing that doesnt make sense?  If she really is your friend, you dont friends on olanzapine you try to get to the root of the problem,  but thats so hard to do, and time consuming its so much easier to shut people up with pills.  ???

Thanks, Magnus. Every little helps. Can you tell me a bit more about how it attacked your back? Pain? Stiffness? Sciatica...?

To answer your question about my friend's behaviour, she has dementia, with all that entails, but was living happily and semi-autonomously in a nice retirement home. However, when something upset her and brought back childhood memories, she became incredibly aggressive practically overnight. She hid near the top of a flight of stairs till the home's head nurse came along then pushed him down the whole flight. The home told me nothing of this until their incompetent doctor put her straight onto a massive dose of risperidone (4mg per day - the normal maximum dose for an acute schizophrenic, not a 95lb (43kg) elderly woman). The next day I found her completely catatonic, and forced them to tell me exactly what had happened. She got covered in bedsores after only a few days of this, whereupon the nurses panicked and stopped the drug, sending her into horrific rebound psychosis, which has lasted to this day (eight months later). Immediately after the withdrawal, she went completely psychotic, stabbed several residents with cutlery, smashed a door, nearly knocked out a cleaner, pulled a frail resident out of her bed in the night. And so on and so forth. It's been downhill all the way from there, via being put on the Liverpool Care Pathway in a hospital geriatric ward, then being fed massive doses of clozapine in a psychiatric rehab centre.

And now it's olanzapine. At least it keeps her moderately calm, and doesn't give her any extrapyramidal symptoms, but something must be causing this bizarre hand condition. I've asked the doctor in her current home to try reducing it to 7.5mg for a couple of weeks, to see if this improves her hands, but the home is threatening to throw her out if I push for this. This place really is the end of the line, and if she gets thrown out of here (having already been thrown out of her first home at less than 24 hours' notice) there's nowhere to go but another geriatric ward, where they'll immediately put her on the Liverpool Care Pathway again to get rid of her. And I can't have her to live with me. I couldn't cope with her (I'm 71 myself) and I couldn't secure my place to stop her jumping out the window or something. Hence my despair...

The only bright note in all this is that I emailed Eli Lilly (manufacturers) in the early hours of this morning to ask about it. To my amazement, they called back just eight hours later. The bad news, of course, is that they'll only deal with her doctor, who's convinced olanzapine has nothing to do with her hands (and may be right, of course) so that's going to be no use. However, she's due to see a neurologist in three days' time, and Eli Lilly said they'd be prepared to talk to her. I know I'll only get about five minutes, but I'm already preparing my pitch.

You're quite right about shutting people up with pills. Half the problem in the current home is that they're so brutal with the old people that half of them fight back out of sheer terror. But like you said, it would be too time-consuming to treat them properly in the first place.

Hi Lilly,

This elderly person you are caring for should NOT be on Olanzapine.

All you need to do for info is visit the FDA website to find out about it.

Here is their info on why this person should NOT be taking it.

"Studies have shown that older adults with dementia (a brain disorder that affects the ability to remember, think clearly, communicate, and perform daily activities and that may cause changes in mood and personality) who take antipsychotics (medications for mental illness) such as olanzapine have an increased chance of death during treatment. Older adults with dementia may also have a greater chance of having a stroke or mini-stroke during treatment.

Olanzapine is not approved by the Food and Drug Administration (FDA) for the treatment of behavior disorders in older adults with dementia. Talk to the doctor who prescribed this medication if you, a family member, or someone you care for has dementia and is taking olanzapine. For more information visit the FDA website: http://www.fda.gov/Drugs "

Best you speak to the prescribing doctor ASAP.....

Sack

Thanks, Sack. Totally agree. I've read just about everything I can find on-line and I know no dementia sufferer should ever be prescribed any neuroleptic drug. Problem is, in the real world at least half of them do get them.

Speak to the prescribing doctor? Are you kidding? He just tells me to get lost. And he'd say the same thing if I was a blood relation. I've talked to families of other residents in the home and they don't get any further than I do. Moving my friend to another home wouldn't make any difference either. Here in Europe - and, from what I hear, across the Pond too - all doctors put aggressive dementia patients on neuroleptics, usually at the insistence of the homes they're in. As you'll see from my earlier post, the home is now threatening to throw her out if I continue to push this point. In this country - and in the UK, from accounts I've read on the BBC site - that means she'd be put on a geriatric ward, rendered unconscious by heavy sedation, feeding and hydration deliberately withheld, dead within a week. Been there once already and had to fight the doctors like a tigress to let her wake up so I could feed and hydrate her myself. 10-mile round trip to the hospital on public transport, twice a day. I'm running out of steam now.

I have to work within the system, hence my original request for any personal experience of olanzapine causing the terrible problems she's suffering with her hands. If I could provide reasonable evidence it was down to the drug, I might be able to persuade them to stop it before both her hands have to be amputated. My one ray of hope is the amazingly rapid response from manufacturer Eli Lilly. That makes me think this isn't the first time they've heard about this problem.

Everything pinned on the visit to the neurologist in two days' time... provided my friend will let anyone get near her, that is. She's like a wild animal at the moment. It's a well-known fact that neuroleptics actually make dementia sufferers more, not less, aggressive because of the confusion and agitation they cause. Yet still they get prescribed them...

Once again: is there anyone out there who has suffered any kind of skeleto-muscular or peripheral nervous system side-effects from olanzapine? And can anyone direct me to any English, French, Dutch or German-language papers on the subject? I need evidence, even if it's only anecdotal.

Lilly I love what you are doing. *heart*  You seem like you really care about someone.

Reading your story just reminds me of how not fun life is, especially towards the end.

About my back on olanzapine, it kinda makes uncomfortably buzz at night and I cant sleep,  but ive been on it long enough now that it doesnt happen anymore.

Im on 10mg of olanzapine a day, But this lady you are worried about, she wouldnt be used to 10mg yet, you have to turn into a zombie over a year then it doesnt affect you so much anymore.

I manage my own drugs now,  I think it has ruined my life. (im 34 now.) My head is constantly dizzy, im nothing like any others my age, I should still be healthy.     I was just constantly forced on it against my will until my brain was destroyed.

 

Dear Magnus, Thank you so much for your kind post.

I'm so sorry to hear you say you feel your meds have ruined your life. Yet I see you say in an earlier post that "insanity is all a form of illogic, so you got to wisen up or youll be on pills for the rest of your life". That suggests to me that you have a huge amount of insight.

In my voluntary work I talk to a lot of people who are schizophrenic or suffering from schizo-affective disorders. I often wonder what it is that distinguishes the ones who have insight - or, more accurately, manage to retain it even during psychotic episodes - from those who don't. I actually think pure intelligence plays a part, but I'm sure it's much more complex than that. It may, of course, just be dependent on the severity of their mental illness. I don't know which type I feel sorriest for.

Is it the man who's spent the last 20 years in the revolving door of hospital admissions and releases? Even when fully medicated (when he calls clandestinely from the hospital on a smuggled phone) he clearly doesn't have a workable grasp on reality. He enthuses wildly about his fantasy life, and appears to fully believe what he's saying. As soon as he's released from the hospital, he stops taking his meds because of the side-effects, is out for a few months, gets steadily worse, then finally gets arrested and sectioned for another six months.

Or is it the woman who flatly refuses to be medicated, or to see a psychiatrist except for the minimum contact imposed on her because she has young children? She contemptuously rejects any kind of therapy, saying she knows far more about it than any therapist. (Something I'm inclined to agree with in view of my own personal brush with the psychiatric profession nearly 50 years ago!) She says she's doing her own CBT, and I can see what she means. She's fully aware that her voices aren't real but still goes through agonies of self-doubt because of what they tell her. It's tempting to think she's got the better deal, but those of us who listen to her in the dead of night know the price she pays for her rejection of conventional treatment.

As you say, life isn't fun, for many people. I know it sounds a bit complacent, but I suppose things are still a lot better for the mentally-ill in the developed western countries where everyone on this forum lives. One hears such terrible stories about old-style asylums in Thirld World countries, and even in eastern Europe. Greece, too, for goodness' sake.

I don't think my friend will turn into a zombie, btw. That's part of the problem. Dementia sufferers react differently to neuroleptics, which make them even more agitated and confused, and therefore more likely to be aggressive (which, ironically, is the reason they're put on them in the first place). But it was ever thus in medicine. When I first started training as a general nurse, more than 50 years ago, all sorts of procedures, treatments and intrusive investigations were carried out, which the doctors privately admitted were useless at best. But some of them are still being used now, because everyone is scared to move out into unknown territory.

And Emis, don't you dare moderate me again for saying something like that! In any case, I've taken a copy this time and will just send it to Magnus by private message if you do.

Haha, Lily you are a nice lady.

Not really insight, its more hindsight. (My first admition was when I was 19, a real fresh little fishy - so its been 15 years)

I Used to be a revolving door myself, but not lately, its been nearly two years since I got locked up, (not one voluntary admition.) im changed now. Doesnt mean I like what happened to me, or what I did to others. But these last 2 years, illest ive ever been, im thinking [more] than I used to.   

I skip so many words when I type, just in a constant daze.    I warn people about modecate (fluphenazine) but peoples side effects/experiences differ so greatly I wonder if its a waste of time to even bother saying that I think that was the clincher that really screwed my head up permanently.

 

Well, Magnus, it at least sounds to me as if you've come to some kind of accommodation with yourself in the last two years, even if life still isn't easy. I can't say I know much about fluphenazine, apart from Googling it. That's at least one of the neuroleptics they haven't put my poor friend on!

As to whether that was what screwed up your head - well you might be right. But then again, you might be wrong. Untreated schizophrenia can also screw up your head permanently. I suspect the answer lies somewhere between the two. I realise that's not much help to you, as you're in the position of having to cope with all this, but at least you seem to have more of a handle on your condition than many other sufferers.

In spite of being in a constant daze, as you say, you still seem to have the capacity to understand this illness, and maybe extend your research. As I'm sure you're aware, R.D. Laing had some very interesting ideas on the subject. Ironically, they didn't seem to help too much in his own personal life, but then that's often true! I don't know whether he has any modern successors, but it might be worth the candle to have a look at this.

I hope you'll be able to hang onto what has clearly been an improvement, and continue working on it.

im sorry, we have to part ways in thinking.   Thats the exact thinking that will get people started medication they wont be able to stop.

But I guess thats just the state of this world, were I have to exist only to suffer.  Just like everyone else.

 

It pains me to have to say this publicly but I agree Magnus. Unless you experience what so called "normal" people do not..which in this day and age is termed "mental illness" you will never know what you are talking about or what you are doing.

Mental Illness is often termed delusional thinking, disconnection with reality and a whole host of other things. The so called normal people who do not have this "delusional thinking and disconnection with reality" believe in a diety they have never seen, heard or had any experience of other than being told it exists by someone who read it in a book...walk around in shoes all day totally disconnected from the very ground that sustains us, eat food made in a factory, smoke cigarettes, drink alcohol and a whole list of other things as long as my arm that are "accepted as normal" because the worldwide marketing machine has brainwashed them into believing so. For the few who do not subscribe to this way of thinking or living they are catorgorised as mentally ill.

One of the reasons that I have come up with that these people have to wear this mentally ill label is that for a large number they are not productive for the machine, ie: unemployed or struggle to fit in. Its no coincidence that Mental Health organisations are springing up everywhere all over the world and the drug companies are pumping out new drugs daily...why? jobs and money.

I am not mentally ill...period! I just think and live my life differently than the mainstream. When you realise this for yourself you really start to see things for how they are, a world full of robots. There are too many people out there working against so called "mentally ill" people. And they are oblivious to the fact they are actually making the situation worse. The best way to help anyone is let them help themselves and I mean "anyone" not just "mentally ill".

The current mentally ill model is based around the religious thinking model. Once you move away from that you are deemed nuts/insane/mentally ill. Yet the world is FULL of people and cultures who do not subscribe to this way of thinking with communities full of "mentally healthy" people. As one simple  example...Native Americans have a term called two spirited people which refers for them to a person who is born with two spirits/souls. This is closely related to the western concept of schizoprhenia. Australian Aborigines have the concept of dreamtime where the earth is full of ancient beings who formed the land and now lie at rest in the shape of mountains, rivers and the likes. Normal people who think differently...and what has happened to these people who lived in harmony with the world and largely at peace...? Wiped out or vilified both then and now for not thinking, behaving or subscribing to the mainstream robotic way of life. Some of people on this thread who are living their lives with this label will probably identify with what I am saying. For the most part the ones who don't will be the people who I see working against people with a "so called mental illness".

The main problem with "mentally ill" people is we are kept apart from each other. Kept apart from talking about issues, ideas, thoughts, beliefs etc and isolated to be "cared" for by people who have absolutely no idea what they are doing other than getting a pay cheque on friday. Why? Divide and Conquer...the oldest form and way of keeping people subdued for centuries.

That is why this forum is so valuable.

Here is an old African proverb...   

"When there is no enemy within, the enemies outside cannot hurt you."

Wow! U r so right Sack! It is such a relief to find someone who truly understands what is going on. Yes, youre right its all a deliberate ploy to as u said keep us suppressed and out of it so that we will keep choosing the wrong evil governments over and over again, governments who are evil and greedy for money.

We are not mentally ill we are actually high IQ people a study has proven that people who anxiety issues have a high IQ.

We all simply know that something is not right with the world and that disturbs us because we r sensitive beings. My husband said this many times over to me and i believe it! This is why now I find that meditation really helps me each day it puts a protective bubble around me and protects me from bad energy entering my bubble. I'm so glad I have discovered this after many years because I would get really debilitated emotionally and mentally from bad peoples energy. Now, I avoid interacting with these people and if I see them I feel safe and protected.

We need to simply keep supporting eachother and rise up as a collect group of people and assist others around us to wake up and rise above the mistreating of eachother and the anger that is so rife in our communities. There is hope it is not too late to save our planet and our people.